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The Missing Factor living without Factor VII

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Less acute bleeds in ankle and elbow - inject 120KIU as soon as happening ... Also now in right elbow ... who can help - difficulty if elbow has become painful ... – PowerPoint PPT presentation

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Title: The Missing Factor living without Factor VII


1
The Missing Factor- living without Factor VII
  • Becky Sands

2
Living without Factor VII
  • Introduction

3
Living without Factor VII
  • About me!
  • 22 years old
  • Getting married in a months time
  • Launching career as an Illustrator
  • Graduated from Lincoln University in 2005 and
  • the odd thousand in debt to the Student Loan
    Company
  • nothing too different there!

4
Living without Factor VII
  • What is different the missing factor is a
    deficiency in Factor VII
  • Effected my way of life and those around me
    parents and husband

5
Living without Factor VII
  • Today
  • Bleeds on average once a week less frequent
    recently
  • Inject myself at home but assistance required
    during a bleed
  • Arthritis in ankle and elbow
  • Some days difficulty walking and lifting

6
Living without Factor VII
  • Finding out about my Factor VII deficiency

7
Living without Factor VII
  • Diagnosis
  • When young - bruising/pain in toes, ankles
    fingers - even tested for gout!
  • In 1995 (aged 12) set myself 1.5km swim
    challenge on holiday, resulting in
  • painful knee and anti-inflammatory treatment
    aspirin and at doctors later a black blue arm
  • blood tests and diagnosed Factor VII deficient
    (level of 1.7 - severe with parents levels
    of 51 50)

8
Living without Factor VII
  • Dealing with the first incident
  • In 1999 had first hospitalising bleed
  • Weekend break 170 miles from home - VERY
    painful/swollen ankle did not realise it would
    get so bad
  • Contacted Lincoln (home hospital) - negotiated
    admission to nearest H. Unit
  • Supplies by emergency car from London to Bristol
    - no Factor VII for 24hrs from start of bleed!

9
Living without Factor VII
  • Treatment
  • Initially, fresh frozen plasma but bad reaction -
    very low bp more needed
  • Factor VII concentrate - this resulted in
    rash/stomach pains
  • Continued to feel ill - in hospital 4 days

10
Living without Factor VII
  • Lessons from the first incident
  • Afraid, especially in hospital away from home
  • Difficulty of knowing you have a bleed,
    especially first time/in early days - so
    treatment delayed
  • Realisation that few AE Depts/doctors have
    experience of Factor VII
  • No supplies were on hand

11
Living without Factor VII
  • Response to the first incident
  • Case reviewed/new 24hr arrangements established
    at Lincoln Hospital - battle plan including
    dosage, where to go for injection, reviews etc
  • New arrangements were comforting and reassuring
    above all it all meant ...
  • a realisation by me of a longer term problem

12
Living without Factor VII
  • Learning how to cope with the problem

13
Living without Factor VII
  • Problems remaining with new arrangement
  • Lack of knowledge beyond the experts, especially
    in hospitals without H. Units - e.g. lack of
    urgency with treatment
  • Finding files and supplies in the middle of the
    night!
  • Worries regarding HIV/other infections - no
    NovoSeven available at that time

14
Living without Factor VII
  • After first incident
  • Had regular bleeds in right ankle and then left
    elbow - treated with Factor VII concentrate,
    preceded by Piriton - administered in hospital
  • Became better, but not good, at predicting bleeds
  • Still had two particular problems at this time -
    the injection supplies

15
Living without Factor VII
  • Injecting myself
  • First time I saw a needle ... I fainted
  • Sister Whyatt began training me to inject myself,
    first ...
  • using a model arm
  • partly on my own
  • on my own in hospital
  • on my own at home
  • in the BACK OF A CAR!!

16
Living without Factor VII
  • Inject into the back of right hand cannot put
    tourniquet on left arm
  • Help needed with injection and for safety
  • Multiple/frequent injections reduces options
  • Husband now training to inject

17
Living without Factor VII
  • Improving supplies
  • In 2000 recombinant Factor VIIA (NovoSeven)
    became available, via the hospital
  • Safe product, easier to administer and store
  • Four 120KIU boxes at home - supplied via hospital
  • Jan 2004 12 boxes supplied direct to home

18
Living without Factor VII
  • Bleeds
  • Less acute bleeds in ankle and elbow - inject
    120KIU as soon as happening/improvement after
    1hr/near full elbow extension in 1 to 2 days
  • Acute bleed - no warning - several doses (e.g.
    120 x 2-6)
  • Abdominal bleeds - possible endometriosis -
    hospital in Sheffield, Hallamshire (Paper) mini
    pill

19
Living without Factor VIIFrequency of bleeds
2003
20
Living without Factor VIIFrequency of bleeds
2004
21
Living without Factor VIIFrequency of bleeds
2005
22
Living without Factor VIIFrequency of bleeds
2006
23
Living without Factor VII
  • Issues surrounding bleeds and treatment
  • Are pains always caused by a bleed?
  • Finding places that I can inject
  • hiccups!
  • Nervousness dependency
  • As a teenager, being taken seriously
  • Side effects, increasing arthritis
  • Pressure on parents and husband

24
Living without Factor VII
  • Arthritis
  • Fairly severe in my right ankle because of bleeds
    before diagnosis
  • Also now in right elbow
  • Had operation to clean elbow steroids in
    ankle, at Sheffield Northern General -
    unsuccessful

25
Living without Factor VII
  • The impact on my life

26
Living without Factor VII
  • Practical issues - Factor VII
  • Take NovoSeven Factor VII pack when away from
    home in UK abroad spare needles etc,
    tourniquet . even flask of hot water!!
  • Storage in 12v fridge, especially for the car
    (good for beer!) check ahead for fridge in room
    or hotel bar!

27
Living without Factor VII
  • Practical issues - Factor VII
  • Have to have someone who can help - difficulty if
    elbow has become painful
  • Travel - medical insurance/security/ letter/ SOS
  • Avoid getting knocked e.g. hard ball
    sports/rapids at Center Parcs!

28
Living without Factor VII
  • Practical issues - arthritis
  • University - art degree (illustration)
  • Uni job in bakery time-off, lifting and
    standing
  • Social drinking (little alcohol!)/no dancing!
  • Driving - automatic as changing gear a problem
  • Career placements, travel, employed/self
    employed

29
Living without Factor VII
  • Some of the benefits
  • Learning to cope with pain and hospitals!
  • Learning more about oneself earlier in
    life/stronger
  • Getting to come to Canada!

30
Living without Factor VII
  • Wish List - existing treatment
  • Early screening
  • More awareness knowledge of treatment in
    hospital/doctors
  • Easier injections or not to have to inject at
    all!
  • Longer lasting

31
Living without Factor VII
  • Wish List - Future treatment
  • Protection of right elbow for drawing
  • Prophylactic treatment?
  • Gene therapy?
  • Effective artificial joints (e.g. ankle)

32
Living without Factor VII
  • Living with NovoSeven
  • Much less pain
  • Less severe arthritis
  • No fears regarding HIV

33
Living without Factor VII
  • Information for patients BPL/NovoSeven
  • Being Me

34
(No Transcript)
35
Living without Factor VII
  • Thank you for inviting me

36
Living without Factor VII
  • Questions
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